Lee Came to the US from the UK looking to try BalanceWear. He had been deteriorating quite a bit the past few months and had great difficulty walking and has balance and mobility issues.

Multiple System Atrophy (MSA) is a rare, incurable disease whose cause is unknown. It currently affects up to .02% of the US population, equally likely to occur in men and women across all ethnic groups. The disease tends to cause initial symptoms in the patient’s 50s, and then rapidly worsens over the course of five to ten years – the patient usually needs the support of an assistive device such as a cane or a walker after only a few years. The earliest symptoms of MSA are similar to the earliest symptoms of Parkinson’s disease; both often begin with slowness of movement, tremor, stiffness, incoordination, and impaired speech. Consequently, it is often difficult to distinguish MSA from Parkinson’s in its early stages. However, unlike Parkinson’s, whose movement-limiting symptoms are caused by the death of nerve cells in a specific, small region of the brain called the substantia nigra, the symptoms of MSA can reflect the death of multiple types of nerve cells in the brain and the spinal cord. Because of the variability in the types of cells that be affected within the MSA diagnosis, a patient’s symptoms generally are classified into one of two types: the parkinsonian type, with characteristics similar to Parkinson’s disease, and the cerebellar type, with characteristics including ataxia and loss of coordination. What both types have in common is a debilitating loss of mobility. Because there is no known cure for the underlying neurodegeneration of MSA, the focus of therapeutic care is on the improvement of the patient’s quality of life by slowing the loss of mobility.

Looks like Lee has new training wheels for the Holidays. We are wishing him the best of luck in his rehabilitation.

Interview: by Sean Noah
Daniela Lee was diagnosed with MS at age 40. The disease limited her mobility and hindered the active lifestyle that she previously enjoyed. But thanks to BalanceWear, she is surpassing the limitations of her diagnosis and reclaiming the activity and independence that she once took for granted.

How did you first hear about the vest as a potential therapy?
I read an article about the BalanceWear balance vest in the National MS Society’s quarterly newsletter. The article described how the vest could improve balance. Given the fact that balance loss was one thing that I had been suffering greatly from, that was enough to get me interested. I looked up the BalanceWear website, and reached out to Cindy.

What was the fitting session like?
Cindy Horn from Motion Therapeutics put me in touch with a very helpful Kaiser physical therapist in Richmond – Judith Fairchild. The fitting session was fast, but also uncomfortable at times – the initial pushing to assess my balance made me dizzy and very fatigued. I had to sit down and rest. Then she told me there were a couple more tests with the vest on. She moved the weights around to places that made sense according to my specific balance issues, and then said that she was going to push me again. I was already thinking “I don’t want to be pushed around again – it’s so uncomfortable!” But then she pushed me and it was a night-and-day difference. I was still a little wobbly, but I didn’t need to reach out and grab her; I was able to catch myself. By the time she finished the testing and figured out exactly where the weights should go, she could push me and I literally did not even move. I could just stand there. It was beyond what I was expecting! Furthermore, my dizziness and fatigue were both gone – I had recovered within ten minutes from my initial discomfort. It was a very positive experience with BalanceWear right away.

After the initial fitting session, how did you feel about BalanceWear?
I only wore the vest that first day for ten minutes in her office, but when I got home, the effects lasted all day. I was still walking at 11pm when my husband came home – I didn’t want to go to bed! My husband looked at me and said “you’re really walking normally, I can tell!” I was running up and down the stairs no problem. The next morning, the effects were slowly fading. From then on it was absolutely clear that BalanceWear was something I had to get. It was such an immediate effect. It was an incredibly powerful, life changing experience – I can’t describe it any other way. I felt like I was back to normal, back to how I used to walk. I’ve had issues walking, even before my diagnosis. To get walking back… people take walking for granted. It’s only when I couldn’t do it any more that I realized how important it was, for mobility, independence, and daily life.
What I realized later, once I got my own vest, was “I don’t have to think about how I’m going to take my next step.” Before, I had to map out my path, think about where I would place each foot for every step – even short 20-yard walks felt like the effort of climbing Mt. Kilimanjaro. But with BalanceWear, I feel like I have little motors in my feet.

How often do you wear the vest?
At the beginning, I was wearing it four hours a day. Pretty quickly I realized that I don’t have to wear it every day – I would still have residual positive effects the following day, so I started playing around with it. “How long will the effects last if I wear it for two hours? What about if I wear it every other day? When will I need to wear it next?” It blows my mind how it works, why it works, and how Cindy came up with the idea.

What is it like to wear the vest?
I can definitely tell when I’m wearing it, but it’s not cumbersome. It’s a positive feeling, because the plastic within the belt that goes over the front makes me feel strapped in – I feel that much more secure.
The only negative aspect is that in the summer it gets very warm because you’re strapped in and there isn’t much room for air to circulate. It can get uncomfortably warm. With MS, heat is one of the really negative outside influences – it brings on fatigue and dizziness, so even though the vest is countering your balance issues, you’re still dealing with the dizziness and the fatigue. A lighter vest would solve this problem.

What are you able to do now that you weren’t able to do before BalanceWear?
BalanceWear has absolutely given me a new sense of confidence in my abilities and my potential. I do still have symptoms that are not related to balance, and I’m aware that the vest is not going to fix those – it’s not a panacea. But I can walk normally, even jog. Before, jogging was not possible, but now, I can jog almost a half mile. I can go downtown to the farmers’ market and get what I need, without having to rest in the car for ten minutes before and after walking around. It’s such a simple thing, but believe me, it’s a big step forward.
What advice would you give to people wondering if BalanceWear is right for them?
Get assessed. Try it out, even if just in the PT’s office. You might feel right away if it makes sense for you or not.
I’m very open about my experience with BalanceWear and MS. If people want to get in touch with me, they are welcome to reach out to me, and I’d be happy to talk to them.

Here is an article about practicing strokes in tennis and the follow through movement making a difference in learning. Practice and repetition is associated with neural changes in the brain. How we practice makes a big difference. In the patient world and for those with disability BalanceWear can provide the balance control needed to practice correct movement. In some cases patients do not realize what is changing and can not feel the difference. An example I noted recently; a patient with cerebellar degeneration did not really feel the difference BalanceWear made in their walking however other people did. Every time she walked she her feet hit her walker because they were so far out to the side in wide base support. When she was wearing BalanceWear her legs were underneath her and did not hit the side of the walker during gait. She said she falls daily even in her walker. Why? Because she trips herself on the walker. She did not feel the difference with her legs underneath her but she is less likely to trip on the walker. Walking with her legs underneath her with a better base of support for many miles over the next several months should provide improved control as the brain learns more accurate movement.http://www.medicalnewstoday.com/releases/287836.php?tw

Yesterday a gentleman asked why his wife falls when she becomes upset; such as in an argument.
I told him many people have to use all their cognitive resources to stay upright. When they are distracted from concentrating on their balance they fall or stumble.

Do you fall when you are distracted?

I searched on the internet but didn’t find exactly what I was looking for but found this very descriptive article on Cognition, Emotion and the Cerebellum

It is a bit complex but what it means is the following. Balance-Based Torso-Weighting (BBTW) can affect people in different ways. Some people have too much variability of movement and need less. Other people are too stiff in their movement and need more variability.

When the researchers looked at what normative movement should be they found that after BBTW their movement on either side of a normal range became closer to normal. BBTW is a very individualized strategic weighting technology. Each person is assessed and light weights are placed to provide input that decreases that particular person’s loss of balance. How the body picks up this information is also individualized because of their particular lesion site, how the afferent information ( nerve signals/ transmission) is relayed to the Central Nervous System, how it is processed, then how the messages are relayed back through the system for automatic postural synergies for balance control. This a very complex system. We are grateful that BBTW seems to be working to improve the process.

Exercise class

Exercise class

Causes of Balance and Mobility Impairment in Multiple Sclerosis

Multiple sclerosis is a progressive autoimmune disease typically diagnosed in young adults, affecting the central nervous system causing damage to the myelin surrounding the nerves and lesions in the brain. Although the disease progresses differently in each person often gait and mobility problems are encountered. Individuals experience many different symptoms such as loss of sensation, visual or vestibular function, spasticity, weakness, central processing and motor output dysfunction. Any or all of the symptoms may contribute to a loss of balance leading to difficulty in walking.
If you experience balance problems you should see a physical therapist who is knowledgeable in treating patients with multiple sclerosis. Many people in my MS exercise class partially funded by the MSFoundation find they are able to do so much more than they thought they were capable of. When people get the diagnosis that they have a neurodegenerative disease and experience a relapse many do not rehabilitate back to where they started. With proper guidance many of them are experiencing recovery of function that they thought was unattainable.